Strategies for maintaining patient privacy in i2b2
Open Access
- 1 December 2011
- journal article
- Published by Oxford University Press (OUP) in Journal of the American Medical Informatics Association
- Vol. 18 (Supplement), i103-i108
- https://doi.org/10.1136/amiajnl-2011-000316
Abstract
Background The re-use of patient data from electronic healthcare record systems can provide tremendous benefits for clinical research, but measures to protect patient privacy while utilizing these records have many challenges. Some of these challenges arise from a misperception that the problem should be solved technically when actually the problem needs a holistic solution. Objective The authors' experience with informatics for integrating biology and the bedside (i2b2) use cases indicates that the privacy of the patient should be considered on three fronts: technical de-identification of the data, trust in the researcher and the research, and the security of the underlying technical platforms. Methods The security structure of i2b2 is implemented based on consideration of all three fronts. It has been supported with several use cases across the USA, resulting in five privacy categories of users that serve to protect the data while supporting the use cases. Results The i2b2 architecture is designed to provide consistency and faithfully implement these user privacy categories. These privacy categories help reflect the policy of both the Health Insurance Portability and Accountability Act and the provisions of the National Research Act of 1974, as embodied by current institutional review boards. Conclusion By implementing a holistic approach to patient privacy solutions, i2b2 is able to help close the gap between principle and practice.This publication has 17 references indexed in Scilit:
- Automatic de-identification of textual documents in the electronic health record: a review of recent researchBMC Medical Research Methodology, 2010
- Biobanking and pharmacogenomicsPharmacogenomics, 2010
- Serving the enterprise and beyond with informatics for integrating biology and the bedside (i2b2)Journal of the American Medical Informatics Association, 2010
- The Shared Health Research Information Network (SHRINE): A Prototype Federated Query Tool for Clinical Data RepositoriesJournal of the American Medical Informatics Association, 2009
- Instrumenting the health care enterprise for discovery research in the genomic eraGenome Research, 2009
- A Software Tool for Removing Patient Identifying Information from Clinical DocumentsJournal of the American Medical Informatics Association, 2008
- Alternatives to Project-specific Consent for Access to Personal Information for Health Research: What Is the Opinion of the Canadian Public?Journal of the American Medical Informatics Association, 2007
- Evaluating the State-of-the-Art in Automatic De-identificationJournal of the American Medical Informatics Association, 2007
- Patients, privacy and trust: Patients’ willingness to allow researchers to access their medical recordsSocial Science & Medicine (1982), 2007
- k-ANONYMITY: A MODEL FOR PROTECTING PRIVACYInternational Journal of Uncertainty, Fuzziness and Knowledge-Based Systems, 2002